Disclosing genital HSV1 when dating is getting me down

[CollectingAllTheACEs]

Just posting to vent I suppose after another rejection...

I recently reconnected via online dating with someone who I met a couple of years ago and always been attracted to (he used to come into the place I worked). We matched and seem to have been getting on well, it looked like things may turn physical so I had to take a deep breath and...

Tell him that 14 years ago my long-term boyfriend gave me HSV-1 (same as oral cold sores) but genitally. He had the beginnings of a cold sore on his face and gave me oral sex - neither of us knew that transmission like that was possible. Since then I've had several short-term and long-term relationships and always disclosed - I'd say 95% of the time they were happy to go ahead given my explanation - I take medication to suppress outbreaks, use condoms, and listen to my body. Of course I would never have sex during an active outbreak (it happens maybe once a year, twice at most) and have never transmitted it to anyone.

He thanked me for being honest but decided not to take the risk. Totally his prerogative but it's really disheartened me as this is the third time in a row this has happened now. I know of other people who also have it who don't actually disclose anymore, and some doctors advise it's not necessary. The facts are:

• More than 1 in 5 people worldwide have HSV1 or HSV2 genitally
• Of those people, more than 80% will never know because they will never have symptoms (so you could be sleeping with them anyway...)
• It's not routinely tested for during an STI screening
• Even with enhanced screening, the blood test isn't always reliable as accurate diagnosis depends on active symptoms
• Taking all the precautions I do, the risk is <0.1%

It does feel right to disclose on a moral/ethical basis but it's really getting me down. How many people out there are in relationships with a positive partner who will never know? It just makes me feel so depressed and almost dirty when it's something completely out of my control. (Ironically I was quite promiscuous when I was a lot younger yet my only experience of an STD is from a serious partner!)

I would, as with any HSV there's a chance of transmission when not having an outbreak.

Are you actually saying that before you would kiss a new partner you would say 'oh by the way, sometimes I get cold sores on my mouth. Not right now though'

If so, you're the first person I've ever encountered who would

Id be surprised if anyone much tells. Up to 70% of people have HSV1 which can present as genital herpes. 15% ish HSV2.

Doubt many of even people who know they have it tell partners when not in active outbreak.

@Yoheresthestory that was kind of the point I was making, but unfortunately people who do disclose (like me) then get rejected for people who have it anyway but aren't even aware that they do...

I would, yes. Why would I not? I'd want them to tell me! It's just courtesy, if nothing else.

I only recently realised I have HSV on my mouth, as I haven't had an outbreak in my adult life until my 30s (I think I got it from my mother, or sharing drink bottles as a young child), and I'm married, so it hasn't been an issue. But I'd definitely be up front about it.

Otherwise what happens if you start a relationship and then get a whopping big cold sore, and have to explain that you didn't tell them because...you were afraid it would frighten them off? That's not a good look, because it shows you deliberately withheld information that you knew might change their mind.

To add – the fact that lots of people may have it isn't a good excuse, as this person might not. And they deserve to be able to make an informed choice.

Technically, a lot of people say you don't have to disclose HIV if your viral load is zero, as you can't transmit it...but I'd still want to know! And I imagine most people would.

If you're deliberately hiding the truth to ensure someone does something sexual that they wouldn't otherwise do, that's not ethically or morally right.

Hopefully educating people about how common HSV1 is, and that they may already be fairly well protected if they have it on their mouth, will help set people's minds at ease.

I got rid of it with Acyclovir 800 mg a day. I was plagued with cold sores for decades. The GP gave me a giant quantity of Acyclovir. I bombarded the Herpes with Acyclovir and I have been free for 20 years.

Hm difficult, anyone who has ever had a cold sore will be unable to contract it from you because they already have hsv-1, so statistically most people you date aren’t actually at any kind of risk. I’m also not sure how likely it is to actually pass on hsv-1 via sex, I think oral to genital is generally how it’s transmitted..

I get the frustration. 70% plus of people in the UK carry this virus without being expected to ‘disclose’ it (and a lot probably don’t even realise they have it) but you’re made to feel different despite being in the majority of the general population.

I think presenting these facts to potential partners should make it seem scary, misinformation and stigma is probably the issue here.

I get oral cold sores occasionally and so does DH. At no point did we ever have a “disclosure” convo - I would find that weird! DH is a doctor and laughs at me when I make a fuss about a blister on my lips. They are pretty trivial in the grand scheme of things.

OP this was not your question, but a large dose of L-lysine every day has kept my HSV at bay for years.

It amounts to the same thing though, don’t you see that?

Explain please.

This article from your link is very interesting and suggests the stigma around herpes was deliberately whipped up by a pharmaceutical company: https://herpes.org.uk/how-herpes-got-its-stigma/

I would say the stigma would be about having painful, crusted, weeping sores on your genitals, which potentially could flare up as frequently as once a month (or happen as infrequently as a handful of times over many years. You can't know until you have it).

I don't need a pharmaceutical company to tell me that I do not want to experience that.

That’s really interesting!

I’ve never had a cold sore or genital herpes, but it’s really interesting to read that statistically I’ve nonetheless probably been exposed. Just goes to show how ridiculous the stigma is.

Oh well thank you for your considered and intelligent contribution to the thread 🙄

Before the 1970s herpes was just as prevalent - most people had it in some form or another as they do now.

The pharmaceutical company stigmatised the people who had it, made it something shameful in a way that say flu isn't. Flu's also bloody miserable but we just think 'poor thing' rather than run out ringing a bell when someone passes. That was down to that campaign by the company.

The 'potential' for misery you describe is not common with genital HSV1. Most people have little or no symptoms, few/no recurrences, many people have it and never know.

Having a small cold sore on the corner of my mouth has been unpleasant enough, the few times it's flared up! Very uncomfortable. I can only imagine how much worse that type of sore would feel on my genitals! 😬

I know of some people who have it genitally who have only had a couple of very mild outbreaks, but equally I know a couple who have very frequent, painful outbreaks - I don't want to risk getting it myself, because I don't want to find out what camp I might fall into!

That’s really tough OP, I feel your pain. A friend of mine caught it, disclosed to her next partner, he was understanding and they’re now married with two kids. You’ve been really unlucky.

I don't think it's shameful, I just don't want it! And I'm sure no one else wants it either. Which is why people should tell others before they engage in sexual activity, so the other person can make an informed decision. Most people won't care, but some will.

As for flu...well, I prefer to avoid that too, if possible, but it doesn't involve crusted, weeping sores on my genitals! I think I'd be a lot more worried about the flu if it did, frankly. Although if someone knowingly had the flu and their deliberate close contact gave it to me, I'd be quite annoyed.

And you can say most people might only have mild symptoms, but you can't know which group you're in until you catch it, do you? You could be someone who gets a bad outbreak several times a year - who knows. You should be able to give informed consent.

So I would tell any partners about my cold sores, and expect them to be honest about any STIs they might have. Honesty is always the best policy.

Most people with it don’t actually know they have the virus, it’s also not included in nhs std screening (even if you go for a ‘full’ screen it’s not included). So given how prevalent it is and the fact most people with it are completely unaware, it’s very hard to avoid dating somebody with it. You yourself may be part of the 70% of the population with HSV 1 without knowing.

As I've said, I have HSV-1 on my mouth, and in addition I don't have HSV-2 (I'm not in the UK, so was able to access testing). So no, I know exactly what I've got, thanks! And I'd be telling anyone I dated, if I ever had reason to date again.

Personally, I don't think it's unreasonable to expect someone to honestly inform their potential sexual partner of the infectious diseases that they carry. And if they withhold that information specifically because they know it might cause the other person to turn them down, that's really unethical and morally gross.

A person should probably ask as well, but then their prospective partner might lie, so that's not an ideal solution. As I said, honesty is the best policy, especially when it comes to consenting to sexual activity.

And with HSV being so widespread, there should be many people who know they have it too, or people who just aren't that bothered and are happy to date someone who does.